Saturday, February 23, 2008

We All Love Babies!!

And this little guy is completely, utterly, totally adorable!!!

Hop on over to visit Chris at Mothering by the Seat of My Pants. Chris has three kids - and her youngest, John, was born with Trisomy 21. Chris's blog is heartfelt and real - a wonderful perspective of this journey many of us are taking upon learning our children have Down syndrome.

When I meet new parents, I always encourage them to write, write, write - because it is an amazing thing to look back at your initial thoughts and feelings even a year or two into the journey, and to see how much you have grown and learned and evolved as you have come to fall hopelessly in love with your little one.

Chris is getting her feet planted on the path, and you can tell by her words that she is introspective and thoughtful, and that she will cherish this experience.

Thanks to one of my bestest buddies, LauraQ, for pointing me her way!!!

Wednesday, February 20, 2008


This is my first ever created meme - and I am tagging all my wonderful friends in the T21 community. Read my story below about Jake, and then blog your first experience with someone with Down syndrome.

Come back and leave a comment, and I'll add a link for you to this post.

Thanks for playing :)


Tuesday, February 19, 2008


This post is inspired by Dave Hingsburger who writes about his first time meeting a person with Down syndrome.

I first met Jake when I was about 14. His mom hired me to babysit him one day. I knew Jake had Down syndrome, but she never mentioned it. I guess in 1978 it wasn't as easy to integrate it into every day conversation as it is for me to do now.

Its funny how I can remember almost every detail of that day, more than 25 years ago. Jake was a happy, easy going little boy whose glasses fell to the tip of his nose many times. He would take his chubby little hand and push them back up again, never frustrated at how many times he had to do it.

We decided to play with his fuzzy pumper Play-doh toy, putting the little people on the barber's chair, and squishing play-doh through the holes of their heads so that we could give them a haircut. We made crazy hair styles, and had great fun playing - play-doh is also one of my favorite things to do with my children - nothing gets imagination and conversation going like making "cookies" or people or anything you can dream of.

Looking back, I'm sure we played with play-doh just because we wanted to, not because anyone had assigned the task to help with fine motors skills for Jake. And how nice that it was just a kid being a kid.

I had so little experience with anyone who was different, and had no idea what to expect from Jake. I didn't know what he understood and what he didn't, what he liked and what he didn't. All that I had learned from my own mother was so stereotypical - she used the antiquated words to describe people with developmental delays, and assumed they were all the same.

I remember telling my mother when I got home that day that Jake's hands were really dry and rough, and she told me that "their hands are always like that." For years, whenever I met anyone with Down syndrome, I was very conscious of their hands...always looking for those dry rough hands.

Today, one of the things I love the very most about Paige is her hands - soft and supple and very sweet. How very wrong my mother was.

After his lunch, we went out on their front porch to play. Jake decided to go into the house and when he did, he locked the door behind him. I tried to talk him into unlocking the door for nearly an hour. I teased and pleaded, and then....I knew....

I learned a lot about Jake in that hour it took me to convince him to open the door. I learned that he was sorely underestimated. He wasn't unlocking it because he didn't know how. Oh no...

That big belly giggle as he looked out the window beside the door told me he knew exactly what he was doing. He was in and I was out, and he was going to decide when that changed. He was very clever, and thought it was hilarious that he held the Power of the Door.

He would wander to the kitchen table, where he colored and sat for a bit, and then come back to the door to make sure I was still there. After a while, he tired of being alone and let me back in the house - opening the door lickety split when he finally wanted to.

Many people would read this, and say, "oh, people with Down syndrome can be sooo stubborn sometimes."

I don't know - in a world where everyone is always telling you what to do and when to do it, "stubborn" is probably a very good thing...

Strangely, I don't remember if Jake could speak or not. He was about 9 years old at the time, I think. I don't remember having any difficulty communicating with him, and knowing what he wanted as well.

I don't think Jake ever attended school. If he did, it was most certainly a "state school" for children who were classified as mentally retarded. I'm sure he never received any early intervention services like Occupational, Speech or Physio Therapy.

He lived across the street from the High School's soccer and baseball fields, and often I would see Jake riding his big wheel around and around in the parking lot of the fields when there were games going on.

Everyone knew Jake, and everyone watched out for him.

Last I knew, Jake worked as a janitor at the local high school - a school that would have refused him entry when he was a teenager - a place where he was an outsider at best. He's had that job for many years, and everyone at the school knows him. I hear he loves to get the newspaper every day and look at it from front to back. I'm not sure anyone ever taught him to read; I'm not sure it ever occurred to anyone that he might be able to learn.

I don't know if Jake's family still lives in the big yellow house with the front porch anymore. But if they do, I'd sure love to see Jake again - to sit on the front porch with him, and tell him thanks.

I understand, Jake - sometimes I want to lock the front door and watch the world from the window too. But sometimes, ya gotta take the Big Wheel out for a spin too...

Tuesday, February 05, 2008


"My heart...
My soul...
My life...
My darling Paige...
Together, we have no limits"

This is the note that I placed on Paige's incubator when she was born so critically ill. I wanted her to know that I have no limits when it comes to mothering my children, that I will always be there for them, and that together, we can get through anything.

I remember them telling me as they intubated her over and over again, that she was "tired" and I would become so frustrated - how could she be tired, she was a could she be tired of living and breathing already?

I spent a lot of hours with my face inside the little round portal that allowed me a glimpse of my newborn baby - I would talk to her and sing to her, and reach for her hand, one of the only parts of her body that was not covered in medical equipment.

Over and over, I promised her patience - that I could wait for her to be o.k. - that if she needed more time to heal and to grow, I was right there beside her, cheering her on.

And, as the story goes, grow she did - into a beautiful young lady of nearly 11 now.

One of the difficult things I struggle with is the knowledge that I am the mom of a child that would be considered "medically fragile."

I don't much like that role; I'd much rather just be Dakotah and Paige's mom...

Because admitting that my child is medically fragile, and by all accounts, really is, puts me into some sort of weird superhero category that I don't really deserve or want

She was hospitalized nearly a hundred times in her first years of life, with 20 surgeries under her belt before her 5th birthday.

Somehow, that makes me a person to be admired and respected - someone who has bravely gone through a lot, sometimes too much...

But, I'm not that at all. Not at all. I am no more special or brave or any of those other things than any other mother.

I also don't ever want to be held up as the example of how "tough" it can be to have a child with Down syndrome - because it certainly has been one of the greatest blessings of my life, and I am so, so grateful to God for haven given me the opportunity.

These last months, where Paige has been in a full body cast, have been hard on me sometimes. Admittedly, I've had quite a few moments when I have had to remind myself to be patient, that this isn't a race through life, but rather a journey with many paths, each one offering up beauty and lessons if we open ourselves to them.

Other than her first year of birth, when I thankfully had no idea what lay ahead of us as far as medical issues, this has been the longest lasting medical problem we have dealt with. Paige has been in a cast for nearly 5 months.

During that time, I've had to adjust and re-adjust, and then re-adjust again - her schedule, her school, my job, our lives, everything has been affected by this.

And...the reality is, we won't even know if this has been successful until the cast is off, until she tries to walk again. We may very well be facing this all over again in her other hip; we may have to face the reality that she will not ever fully recover from these problems.

So, my heart has been heavy at times, and I have felt very defeated sometimes.

I have a newfound compassion for people such as Tammy, Parker's Mom, and Pam, Rhett's Mom, whose children have been chronically ill, and who's lives have been tumbled upsidedown because of it.

My friend, Melissa, who's daughter has a fatal condition, loves unconditionally, and tirelessly, with the knowledge that Bella is not going to get better.

This morning, I read the news that a very nice person, who's daughter with T21 died at 18 months, has now learned that her five-year-old son has a cancerous brain tumor.

I am not worthy of these brave people who's lives I've been so lucky to learn about. I cannot even comprehend walking in their footsteps for a day.

But, if I were able to, I'd follow along behind and lighten the load as best I could.

And as I walked behind them, I'd remind myself of some very wise words from my friend, "get over myself"

The world is such a beautiful place - and I am grateful to be a part of such a glorious community of friends.